#inclusionbodymyositis

[livinglifeinflipflops]

Started Hizentra today! This one I can do myself! . . . #scig #hizentra #subq #igg #chronicillness #6needlesticks #freedompump #lupus #inclusionbodymyositis https://www.instagram.com/p/CI6mBCoJHZj/?igshid=1krm4mvskorzd

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List your Myositis Doctors

In an effort to create a better listing of physicians who diagnose and treat #myositis, we are asking you to use our web form to enter as many details as possible about the physician's you see for your myositis. This will be helpful for patients looking for a new doctor and for new patients looking for their first.

There is also a rating when you list the doctor. Please rate them seriously according to how you feel they understand and treat you and myositis.

We appreicate your support in this endeavor. 

https://UnderstandingMyositis.org/list-doctors

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Myositis Support and Understanding Association Supports Rare Disease Day® and Joins Global Movement to Raise Important Awareness for Rare Diseases

Lincoln, DE—February 20, 2018—Myositis Support and Understanding Association (MSU) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

As part of the MSU patient-centered focus and commitment to educating and supporting those with myositis, a rare disease, MSU is hosting two live online video education sessions on Rare Disease Day, February 28, 2018, as well as a month-long celebration with patient support and activity sessions. The focus for MSU is the idiopathic inflammatory myopathies, which includes dermatomyositis, polymyositis, juvenile dermato- and poly- myositis, inclusion body myositis, and necrotizing autoimmune myopathy.

Dr. Victoria Werth, MD, will join MSU for a live, online video education session titled “Overview and new developments in dermatomyositis” at 2PM EST on Rare Disease Day. Register here.

Also, Nurse Vicky Starr, RN, IgCN, will join MSU for a live, online video education session at 6PM EST on Rare Disease Day, titled “IV and SubQ IG Therapy for Myositis.” Register here.

  See ful release

[livinglifeinflipflops]

Round 45!

New blog post: Round 45!

Round 45 was the week of August 5th. It was 4 weeks from the last round of infusions, as they wanted to give me a registry nurse, and again, I said no. I guess they keep losing regular nurses, plus they let too many people go on vacation at the same time. All the while, the patients suffer.

Anyway, my nurse, Debra was back. She was out for awhile taking care of her daughter who had surgery, then…

[livinglifeinflipflops]

Round 44!

New blog post: Round 44!

I know, I know, I’m so far behind on these blog post. Life and other shit has gotten in the way, especially migraines! Round 44 was the week of July 8th. It was 4 weeks after the last round, instead of 3 weeks, because there was a mix up of nurses , and they wanted to give me a registry nurse again. I don’t understand why I’m the one getting stuck with the registry nurses, but that’s a whole…

[livinglifeinflipflops]

Just not feeling this infusion today! . . . #ivig #lupus #inclusionbodymyositis #homehealthcare #infusions #portacath #chronicillness https://www.instagram.com/p/B01GBoogWRP/?igshid=1m3jbhmbj5vj5

[livinglifeinflipflops]

#IVIG week! . . . #lupus #inclusionbodymyositis #homehealthcare #portacath #chronicillness https://www.instagram.com/p/B0yq6p6gRdE/?igshid=ja19mpqwrryv

[livinglifeinflipflops]

My baby always by my side during infusions. . . . #round44day2 #ivig #emotionalsupportdog #lupus #inclusionbodymyositis #infusions #homehealthcare #portacath https://www.instagram.com/p/BztPHJMgzm4/?igshid=g6njfq76g3ih

[livinglifeinflipflops]

Round 42!

New blog post: Round 42!

Round 42 started on Saturday, May 11th. We started it on a Saturday, as my regular nurse Elizabeth came back, but she was going out of town on Wednesday for the birth of her grand baby. I didn’t mind doing it on the weekend, but I don’t think my husband was too thrilled! I also found out from Elizabeth that she’s moving in August, so she won’t be my nurse anymore. I’m so sad, but she’s going to…

[livinglifeinflipflops]

Round 41!

New blog post: Round 41!

Round 41 was the week of April 22nd, so I’m not that far behind on writing this blog post! Ha! Still no blood return this round, but really nothing to worry about, so says my nurse.

This was a hard week for me, because I was also sick with bronchitis. I didn’t sleep much during my infusions, because I was also on antibiotics, prednisone and bezonatate. I tried to rest, but I was uncomfortable,…

[livinglifeinflipflops]

Show your support! #rarediseaseday #inclusionbodymyositis https://www.instagram.com/capturedbytammy/p/BucMFNFnrml/?utm_source=ig_tumblr_share&igshid=erw13subzsrk

[myositis]

Mental Health & Myositis Awareness Month’s meet, Jerry shares his story

[myositis]

With #myositis, chances are we may need social security disability. Check out this link to learn more about SSDI.

[myositis]

Rare Disease Day 2017 was held on February 28th. It is always held the last day of February. This year, Rosemary McNamara attended Rare Disease Week on Capitol Hill and she took a lot of notes and recently did a video information session with MSU and fellow patients and care partners.

This blog piece serves as an addition to her video to provide you with short pieces of information and links to the sites she mentions during the video.

Please note that some of the following information is directly from RDLA’a flyer.

[livinglifeinflipflops]

Round 22 Day 2!

Today went okay. Still no blood return, but I’m still flushing and flowing good. My nurse isn’t too concerned about it right now, but we do have some Cath Flow on hand in case we need it.

My IV hydration really helped today. The side effects were at a bare minimum. I’m getting 500ml of hydration right now, starting next round, my doctor upped my hydration to 1L. I requested it, since it really…

[myositis]

Top 5 things to consider when designing an accessible bathroom for wheelchair users.

Those whose loved ones Myositis has progressed to the point of having to use a wheelchair or power chair may realize that renovating their bathroom is now a must, check out these 5 tips. Planning is important to keep costs as low as possible.